Abstract
Stroke is a leading cause of disability and dependence on the family, specifically daughter caregivers. The quality of the parent–child relationship can influence the experiences and well-being of daughters. Little is known about this in the context of stroke caregiving. We aimed to explore daughters’ perceptions of changes in the relationship with their parent and how these changes contribute to their well-being. We used a qualitative descriptive design. Twenty-three daughters completed one in-depth interview that was transcribed, reviewed, coded, and categorized to generate themes. The parent–child relationship was central to each of the three themes: It (a) led daughters to take on the caregiving role, (b) changed as a result of caregiving, and (c) contributed to daughters’ physical and emotional health. Targeted counseling that addresses changes in the parent–child relationship can help mitigate losses in communication and intimacy between daughters and parents. Insight into temporal relationship changes is needed.
Current demographic trends indicate that North America and Europe are shifting toward an aging population. In Canada and the United States, 15% and 12.8% of the populations, respectively, are 65 years and older (Administration on Aging, 2012; Giannakouris, 2011). The trend in Europe is similar with those aged 65 or older comprising 17.1% of the population (Administration on Aging, 2012; Cranswick & Dosman, 2008). With the Baby Boomer generation reaching retirement age, it is estimated that this percentage will rise to nearly 20% in both Canada and the United States by 2030 (Giannakouris, 2011) and to nearly 40% in Europe (Raina, Dukeshire, Lindsay, & Chambers, 1998).
As the proportion of elders in the population rises, concerns regarding aging-related illnesses and their management emerge. Because the risk of having a stroke doubles every 10 years for individuals 55 years and older (Heart and Stroke Foundation of Canada, 2010), stroke is a leading cause of disability among older adults (Sacco et al., 1997). The majority of elders in North America and Europe survive the stroke episode because of early identification and treatment (Bejot et al., 2007; Mayo et al., 2000). However, among those who survive, approximately 50% will live with moderate to severe cognitive and/or physical impairments, limiting their ability to fully care for themselves in the community (Hollander, Lui, & Chappell, 2009).
Community care services to assist stroke survivors are limited. As a result, most of the assistance that stroke survivors receive in the community is provided by their family (Bergman et al., 1997; Wilkins & Park, 1998). The annual unpaid labor provided by Canadian family caregivers is valued at more than $25 billion CAD (Hollander et al., 2009), with $150 million CAD attributable to stroke caregiving alone (Teasell, Meyer, Foley, Salter, & Willems, 2009). This highlights the active role that the family plays in supporting the stroke survivor’s community reintegration.
Family members of stroke survivors often take on the caregiving role with little preparation for the management of the physical, behavioral, and cognitive limitations that a stroke survivor might experience (King, Ainsworth, Ronen, & Hartke, 2010). As a result, these caregivers are prone to declines in well-being and social functioning (Wade, Legh-Smith, & Hewer, 1986). When family caregivers lack support and resources, they experience greater financial, physical, and psychosocial costs, and this can ultimately compromise the quality of care they are able to provide (Mayo et al., 2000). For this reason, identifying and meeting caregiver needs continue to be an area of research priority.
Studies on caregiver health and well-being have spanned populations affected by various illnesses, including cancer, dementia, and stroke. Topics that have been investigated include caregiver needs (Bee, Barnes, & Luker, 2009; McKeown, Porter-Armstrong, & Baxter, 2003), correlates of caregiver health outcomes (Black & Almeida, 2004; Greenwood, Mackenzie, Cloud, & Wilson, 2008), and caregiving interventions (Selwood, Johnston, Katona, Lyketsos, & Livingston, 2007; Thompson et al., 2007). This body of literature, however, has been disproportionately representative of the health and experiences of spousal caregivers. At present, 67% of Canadian caregivers above the age of 45 are adult children (Cranswick & Dosman, 2008). This trend suggests that adult children are increasingly becoming primary caregivers to aging parents. Among these adult children, adult daughters provide 70% to 80% of the care that elderly parents receive (Stein, 2009). The uptake of the caregiving role by women has been extensively discussed and theorized in the literature.
The gender-role socialization perspective suggests that cultural norms and gender-based divisions of labor (e.g., women enacting nurturing vs. instrumental behaviors) lead women to internalize gender roles from a young age (Miller & Cafasso, 1992), predisposing them to the “caregiver” role later on in life. Glenn (2010), however, proposes that the disproportionate uptake of the caregiving role by women is rooted in a history of social policies that attributed domestic roles to women (e.g., wives, mothers, and daughters) and assumed that they had the primary responsibility of unpaid care. The socialist feminist perspective reinforces this criticism of gender socialization by suggesting that uptake of unpaid care by women stems not from “nurturing predispositions” but from the interplay between capitalism and patriarchy (Stoller, 1993). This has led to occupational segregation and lower wages for women, which maintains and perpetuates the cycle through which women become unpaid caregivers (i.e., women make less and therefore lose less than men when they take on the caregiving role; Stoller, 1993).
Most relevant to the adult daughter caregiver, however, is the social role perspective, which suggests that certain roles or a combination of roles can exacerbate the stress that one experiences (Miller & Cafasso, 1992). An extension of this perspective is offered by adult development research and is particularly applicable to children caring for elderly or ill parents. Adult development research suggests that because the responsibilities of child care and employment are absent later in life, older women do not need to balance family support and career development as much as middle-aged women. This means that older women experience less pressure to balance multiple responsibilities. In turn, gender-related stress is a more prevalent issue among adult children caregivers compared with spousal caregivers (Miller & Cafasso, 1992).
This particularly highlights the unique experiences of adult daughter caregivers. For example, upon assuming the caregiving role, adult daughters must adjust their lives to accommodate this added responsibility (Bachner, Karus, & Raveis, 2009; M. A. Stephens, Townsend, Martire, & Druley, 2001). This might result in role conflicts that negatively affect daughters’ well-being and life outlook (S. A. Stephens & Christianson, 1986). Daughters are also more likely than sons to provide emotional support while caregiving (Merz, Consedine, Schulze, & Schuengel, 2009) and tend to place greater importance on the relationship with their parent (Mui, 1995). In turn, daughters might be more sensitive to postillness declines in the parent–child relationship and can experience greater emotional distress as a result (Li & Seltzer, 2003). This emphasizes the importance of exploring the parent–child relationship and its implications for daughters’ well-being and caregiving experience.
The relationship between the daughter and her parent can be described according to attachment style, feelings of conflict, or feelings of ambivalence (Carpenter, 2001). Daughters who have a positive relationship with their parent (e.g., are close and have secure bonds and little conflict) experience less burden and report better well-being than their counterparts who have poor relationships with their parent (Carpenter, 2001; Marks, Lambert, Jun, & Song, 2008). One study that focused on intergenerational relationships found that over the course of 4 years, relationship quality predicted well-being in adult children, whereas the quantity of support to parents did not (Merz, Schuengel, & Schulze, 2009). This finding highlights the important influence that relationship quality can have on a daughter’s well-being, especially when compared with other elements of the caregiving context (e.g., support provision). Parent–child relationships tend to be longer in duration than spousal relationships and are often shaped by a complex history. This might have different and unique implications for daughters’ experiences and well-being.
Although the current literature has provided some insight into the influence that the parent–child relationship can have on adult children’s well-being, several gaps in our knowledge remain. First, existing studies have largely focused on either the pre- or postcaregiving relationship between the child and parent. Few studies to date have investigated relationship changes that occur as the adult child transitions into and carries out the caregiving role (Li & Seltzer, 2003; Merz & Consedine, 2009). Consequently, our knowledge of how these changes might contribute to well-being is limited. Second, few studies have focused exclusively on the parent–child relationship as it pertains to daughter caregivers. Because daughters provide the majority of parental care and place a high value on the relationship with their parent, their experiences can inform future support efforts tailored to meet this caregiving population’s needs. Third, most studies that focus on adult children or daughter caregivers have not been conducted in the context of a particular illness.
As a result, we have little insight into illness-specific circumstances and outcomes for the daughter caregiver population. The risk of stroke among the aging population combined with its sudden onset suggests that this illness population is a good place to begin investigating relationship issues and well-being for daughters. Finally, the majority of what we know about daughters and their relationship with their parent is derived from primarily quantitative studies (Li & Seltzer, 2005; Merz, Consedine, et al., 2009; Merz, Schuengel, and Schulze, 2009). Given the multifaceted nature of relationships and their complex interaction with well-being, quantitative methods are limited in their ability to provide rich details about these aspects of the caregiving experience for adult daughters.
In this qualitative descriptive study, we aimed to address these gaps by exploring the caregiving experience of daughters, their perceptions of change in the parent–child relationship, and how these changes contribute to their well-being. We conceptualized “well-being” as caregivers’ subjective assessment of the quality of their lives, including emotional responses and cognitive judgments (Diener, 1984).
In this qualitative descriptive study, we aimed to answer the following questions: What aspects of the pre- and poststroke parent–child relationship contribute to daughters’ well-being? What changes, if any, do daughters perceive in the parent–child relationship over the course of their caregiving experience? How, if at all, do these changes contribute to daughters’ well-being?
Method
Research Design
We employed a qualitative descriptive approach. Qualitative description entails a concise and descriptively rich analysis that remains true to the data. In this way, it is less interpretative than other qualitative traditions and produces a “data-near” report (Sandelowski, 2010). This method of qualitative inquiry produces an account of the data that is easily interpreted by policy makers and practitioners, thereby making the findings meaningful to these key stakeholders and potentially applicable to care situations (Sandelowski, 2000).
Qualitative description borrows from phenomenology and grounded theory insofar as it uses an iterative data collection and analysis process. However, unlike research using grounded theory, we did not aim to use the experiences of individuals to build a theory or conceptual model (Creswell, 1998). We decided this largely because of the number of theories in the caregiving literature that already focus on roles and relationships. In addition, we did not conduct a study applying phenomenology because we did not aim to construct a prototype of “lived experiences” across daughter caregivers (Creswell, 1998). Rather, we aimed to describe the range of daughters’ experiences and perceptions of the parent–child relationship.
Participants
Participants were eligible for this study if they were (a) a woman, (b) caring for a parent who had a stroke, (c) English-speaking, (d) 18 years of age or older, (e) centrally involved in providing and/or coordinating care for their parent (i.e., aiding with one or more activities of daily living [ADLs] at least once a week), (f) first- or second-time stroke caregivers (where the first stroke was mild), (g) providing care in Canada, and (h) providing care at home for a minimum of 1 month. We used purposive sampling and aimed to include caregivers providing assistance to parents with physical or cognitive limitations, with a minimum of five daughters providing care associated with cognitive limitations.
Recruitment
Participants were recruited (a) from three rehabilitation centers in a large urban city, (b) from two community stroke support programs, (c) by advertising in a free community transit newspaper, and (d) through an email sent to the rehabilitation sector of a major university. The various recruitment strategies helped us reach participants at different points along the caregiving trajectory. For example, those recruited through the three rehabilitation sites were typically newer to the caregiving role. The newspaper advertising and community stroke programs helped us to reach participants who were not visiting a health care site and therefore might have been further along the caregiving trajectory. The community newspaper is also widely distributed (e.g., in the downtown core and across various suburbs) and therefore helped us to include participants from different cultural and socioeconomic backgrounds.
All participants were screened for eligibility. Before we began recruitment, the research ethics boards of the institutions involved in the research (i.e., three rehabilitation institutes, one academic institution, and two community support programs) reviewed and approved the study in 2011, in accordance with the Tri-Council Policy for Ethical Conduct Involving Humans. This policy states that researchers must respect (a) human dignity, (b) informed consent, (c) vulnerable populations, (d) privacy and confidentiality, and (e) justice and inclusiveness. In addition, researchers are responsible for minimizing harm and maximizing benefits.
The interview guide aimed to steer daughters toward discussing their perceptions of and experiences with their parent’s care needs. In turn, the ethics boards did not raise any issues pertaining to the daughters discussing their parent’s health condition without their permission. All of the daughters who were recruited for the study received both written and verbal information about the study and associated risks prior to providing informed consent.
Data Collection
We recruited participants until theme saturation was reached (i.e., no new ideas were uncovered). On the basis of previous qualitative studies, we chose a projected sample size of 15 to 20 daughters (Starks & Brown Trinidad, 2007; Thorogood & Green, 2009). Each daughter participated in an in-depth interview that was either conducted over the telephone or in person. In each interview, we used open-ended questions to ask daughters to describe (a) their parent’s stroke experience, (b) the transition into the caregiving role, (c) the caregiving experience, (d) the pre- and poststroke relationship with their parent, and (e) perceptions of their own health.
Questions specific to eliciting narratives surrounding the parent–child relationship included the following: Can you describe what your relationship was like with your mother/father prior to their stroke? Can you describe what your relationship with your parent has been like since their stroke? Thinking about your caregiving experience, do you feel your relationship with your mother/father has been a factor? We used probes to explore what the daughters’ relationship with their parent was like as they grew up (i.e., from childhood into adulthood) and how it had changed since the stroke occurred (e.g., “How do you and your parent get along now?” and “How do you feel about the type of care you provide to your parent?”).
For descriptive purposes, we collected demographic information about the daughters’ age, employment status, marital situation, and income level. The Caregiver Assistance Scale (CAS) also was included and consisted of 17 items asking caregivers to rate the amount of assistance they provide with a variety of ADLs and instrumental activities of daily living (IADLs) on a scale from 0 (none) to 6 (a lot; Cameron, Cheung, Streiner, Coyte, & Stewart, 2006). Total scores range from 0 to 102, with higher scores indicating that more assistance is provided. The CAS has been shown to have good internal consistency (α = .87), and although reliability scores have not been reported, this measure has been used in numerous studies (Cameron, Franche, Cheung, & Stewart, 2002; Tansey, Louie, & Loeb, 2007).
The caregivers also completed the Revised Brain Impairment Behavior Inventory (BIBI; Cameron et al., 2008) to describe the severity of the stroke survivor’s cognitive symptoms. The BIBI consists of 18 items that ask the caregiver how many times in the past 2 weeks they observed the stroke survivor behaving in a particular way, where the behavior categories were (a) apathy (reliability: r = .75; internal consistency: α = .91), (b) comprehension/memory problems (reliability: r = .88; internal consistency: α = .83), (c) depression/emotional distress (reliability: r = .82; internal consistency: α = .78), and (d) irritability (reliability: r = .81; internal consistency: α = .78). Each item could be rated on a scale of 1 (never) to 5 (all the time), with 90 being the maximum score. Higher BIBI scores indicate more cognitive symptoms.
Finally, daughters were also asked to indicate their perceptions of the limitations that their parent had (e.g., predominantly cognitive limitations, physical limitations, or both). Each interview was transcribed verbatim by a professional transcriptionist. The authors then checked for accuracy by cross-referencing the transcripts with the original audio files. Identifiers were removed by the authors during the analysis and manuscript preparation stages.
Data Analysis
Thematic content analysis entailed identifying themes that emerged from the daughters’ narratives (Braun & Clarke, 2006). This analysis was initiated by doing an open coding of the transcripts and generating first impressions of the data (Braun & Clarke, 2006; Patton, 2005). We began open coding after 10 interviews were completed. On the basis of these impressions, the first author developed an exhaustive coding scheme that was applied to all transcripts once data collection was completed (Braun & Clarke, 2006). NVivo version 2.0 qualitative data analysis software (QSR International, 2002) was used to facilitate the coding process. Analyses included comparing and contrasting the coded data and categorizing similar ideas. The final phase of the thematic analysis entailed reiterating the compare-and-contrast process (Braun & Clarke, 2006; Patton, 2005). We labeled the categories as “themes” after several reviews and once they were distinct enough in content from one another.
To achieve triangulation, we involved each author in the codebook development and refinement process. Marina Bastawrous coded the transcript data, and both Marina and Jill Cameron reviewed the coded data and then developed themes. Monique Gignac and Moira Kapral further contributed to refining the themes generated. Multiple analyst triangulation helped to reduce bias and enhanced the credibility of the findings (Patton, 1999).
Findings
Twenty-three daughters participated in the study, with the median age being 47 years old (interquartile range [IQR] = 38–54). Most daughters were married (63.6%) and educated at a college level or higher (59.1%). Half of the daughters co-resided with their parent. All of the daughters participated in an interview, and all but one completed the self-administered questionnaire. In-person interviews were conducted with 3 of the daughters, whereas the remaining 20 completed telephone interviews. This was largely because of geographic and time constraints that made it difficult for the daughters to meet with the first author in person. No differences in quality or quantity of data were detected between the two data collection formats. This is in line with research suggesting that in studies such as ours where the goal is to gain a breadth of experiences, telephone interviewing is a versatile tool and does not compromise the quality of data compared with in-person interviewing (Novick, 2008).
The interviews lasted a median of 46 minutes (IQR = 40–62.5) and were conducted a median of 11 months after the stroke event (IQR = 1–22.8). The daughters had been providing care for a median of 6 months (IQR = 0.5–36 months). The median CAS score was 55.5 (IQR = 32.5–63.6). Daughters reported more assistance to parents in the domains of IADLs (e.g., transportation and communication with health care professionals) than with ADLs.
The median BIBI score was 48.5 (IQR = 42–62.5), indicating that the stroke survivors had moderate cognitive impairments. Daughters reported the highest scores in the BIBI subscales of depression/emotional distress and apathy. The majority of the daughters described their parent as suffering from both cognitive and physical limitations; however, three daughters explained that their parent had predominantly physical limitations, whereas two others noted that their parent had predominantly cognitive limitations.
Three key themes were identified: (a) The prestroke parent–child relationship and concern for the parent’s well-being led daughters to take on the caregiving role; (b) changes in the parent–child relationship occurred as a result of providing care; and (c) caregiving duties and the parent–child relationship contributed to physical and emotional health. These themes were linked by the overarching notion that the parent–child relationship both shapes and is shaped by the caregiving experience. Each theme is described in detail below, and sample quotations from participants are provided to illustrate key points. Although the majority of the daughters described having “good” relationships with their parents prior to taking on the caregiving role, some did describe more turbulent relations. Variability in the experiences of daughters with good versus bad relationships will be highlighted as they pertain to the different themes and subthemes.
Taking on the Caregiving Role
Daughters explained that a variety of considerations contributed to their decision to take on the caregiving role. These considerations included both intrinsic motivations (e.g., desire to “give back” to a parent) and extrinsic motivations (e.g., social circumstances dictating care needs). When daughters discussed their intrinsic motivations, they focused mostly on the prestroke relationship the caregiver had with her parent (e.g., the quality of the relationship and past positive experiences with parent). When daughters discussed extrinsic motivations to provide care, they focused less on their relationship and more on the concern they felt for their parent’s well-being.
Parent–Child Relationship Influences Daughters’ Intrinsic Motivations to Care
Daughters who described “good” relationships with their parent explained that they had strong ties with them and that they engaged in activities that allowed them to remain close (e.g., speaking often and spending time together). These daughters not only loved and respected their parent but also felt a sense of responsibility for their well-being. They also discussed being supported by their parent throughout their lives (e.g., financially and emotionally). In turn, taking on the caregiving role was an easy decision to make and one they did not have to “think twice about” because they wanted to “give back” to their parent and help them recover.
Whereas some daughters discussed specific things for which they owed their parents (e.g., emotional support and financial aid), other daughters felt that they owed their parents because they were “always there for them” or simply by virtue of them being their parent. One daughter commented, “Well she’s my mother; we’re very, very close. So, of course—she needs me. Why wouldn’t I be here? She was always there for me.” Another daughter said, “Because they [your parents] brought you into this world, raised you . . . so that means you owe them everything, too . . . it’s sort of like giving back.”
Daughters who perceived that they had “poor” relationships with their parent explained that they did not speak to or see them regularly because of conflicting personalities and the inability to communicate well. These daughters did not discuss any obligations or desire to give back support to their parent. Nevertheless, these daughters explained that they felt an intrinsic sense of obligation to their parent because they were still family even if the relationship between them had been turbulent. One daughter who had a poor relationship with her father viewed taking on the caregiving role as a “moral duty”: I guess I don’t know how other people are in this situation, how they end up becoming a caregiver, but for me it was just like, “This is the right thing to do, so I’m going to do it,” . . . like familial obligation.
Extrinsic Motivations to Care Center on Concern for Parent’s Well-Being
Extrinsic motivations led daughters to take on the caregiving role as a means of ensuring that their parent would receive high-quality care and hopefully experience better well-being. In many cases, daughters explained that, although other options for care existed, they did not pursue them because they would have resulted in lower-quality care for their parent. This was the case when (a) daughters felt that their personalities, dispositions, or experiences were better suited to the caregiving role than other family members; (b) care alternatives were not thought to be conducive to parental recovery (e.g., nursing homes); and (c) daughters felt that they were better suited to provide care because they were women.
Daughters explained that, even when other family members (e.g., parent’s spouse or sibling) were available to become the central caregiver, their personalities and experiences were not as well suited as those of the daughter. Several daughters had employment experiences that they felt contributed to their knowledge and ability to provide care to their parent. For example, one daughter remarked that her professional experience in working with disabled children made her a “natural” choice for the caregiving role: “I’m just a really caregiving kind of person. In my job, I worked in the school system with children with special needs. So . . . that’s my nature. To naturally want to do that.” Many daughters were aware of nursing home and long-term care options but were adamant that these were “last resorts.” This was mainly because they worried about the cognitive and physical decline of their parent in these settings. One daughter expressed her concern about the quality of care her mother would receive in a nursing home and how this might affect her recovery: The nursing home was the very last place that we wanted her to go because we figured that she still had a lot of healing to do . . . and if she was in a nursing home she probably wouldn’t improve because there wouldn’t be the stimulation, and it just would be a lot harder to look after properly.
Several daughters suggested that their role as a “daughter” or “woman” predisposed them—more so than relatives who are men—to becoming the caregiver. Daughters explained that they were better suited to provide intimate care (e.g., bathing and toileting) and emotional support (i.e., listening, talking, and encouraging) to the parent. This was most pronounced when the daughters were providing care to a mother (i.e., women-specific needs are better met by the daughter). One daughter’s comment reflects this point: I’m the only daughter; it was all put on me of course . . . My brothers aren’t going to go out and buy her nightgowns, you know. Or underwear or any personal items that she needs. They’re not going to do that. They’re not going to be cooking for her. Just, you know, things that a daughter or a female [does].
Changes in the Parent–Child Relationship Occurred
Daughters felt that—compared with the prestroke relationship they had with their parent—a number of changes had taken place. These changes included (a) difficulties in “getting along” with their parent, (b) changes in the typical “parent” and “child” roles (which led to a sense of relationship loss), and (c) some positive enhancements in the relationship with their parent.
“Getting Along” Is Difficult
Nearly all of the daughters acknowledged that tension had been introduced into the relationship with their parent since they took on the caregiving role. As a result of this tension, “getting along” with the parent had become difficult. One source of conflict was the mismatch between parental expectations and daughters’ provision of care. Daughters expressed frustration over the inability to meet their parent’s needs and expectations. This often happened when the parent expected the daughter to do more than what she felt was reasonable or to make herself more available than she was able. Ultimately, this contributed to daughters feeling underappreciated. One daughter commented on the discrepancy between her and her father’s opinion about the amount of care she provided: There was time when it was hard . . . they expect a lot . . . then you felt like they want even more than I can do . . . they think I’m not there enough, and I thought I was there more than enough.
This feeling of underappreciation was exacerbated by the parent becoming more aggressive and irritable as a result of the stroke. In many cases, the parent reacted harshly toward the daughter, making it difficult for her to feel as though she was pleasing them. One daughter described how her mother’s demanding attitude caused her to feel as though she was not doing enough: She doesn’t realize she’s doing this, but she can be short and very demanding . . . you tend to feel like you’re being unappreciated or that you’re not doing a good enough job because she has this kind of irritated manner.
These personality changes also caused the parent to become less agreeable and cooperative with the daughter, which added to the difficulty of “getting along.” Daughters indicated that their parent had become more stubborn and less willing to comply with their assistive efforts (e.g., stimulating and engaging them and preparing them for appointments). One daughter conveyed her frustration with her father’s ill compliance and argumentative attitude, especially because she had his best interest at heart: “I guess I was angry and upset that he couldn’t see that I was only doing it for his own good.”
The narratives of daughters who had good prestroke relationships with their parents suggested that continuing to “get along” was especially difficult for them. The difficulty they experienced in dealing with their parent’s new personality seemed to be aggravated by their longing for their previously agreeable, loving, and caring parent. One daughter explained that her father’s “new self” was difficult to handle, especially because her old father seemed to have “died”: His personality changes . . . things he would never ever say, he would say . . . and he was just a different person . . . That was difficult because it seemed like your father died . . . and this new person had arrived.
Changes in Typical “Parent” and “Child” Roles Generate Feelings of Loss
Daughters felt that the “parent” and “child” roles had reversed because of the types of caregiving tasks daughters were performing. Several daughters discussed the need to aid their parent with meal preparation and feeding. In some cases, the parent’s reliance on the daughter for this assistance was so extensive that the parent would otherwise not be fed. Many daughters found the provision of intimate care (e.g., toileting and bathing) to be emotionally difficult not only for them but also for the parent. One daughter commented that the type of support she was providing to her father was outside of what she perceived to be her “normal” role as a child: So it’s just the relationship and how the roles kind of are reversed . . . that’s kind of weird. You don’t normally have to bathe your parents . . . disciplining him, feeding him . . . taking him to the doctor. It’s totally role reversal.
Many daughters went as far as to characterize their experience of the role reversal by comparing parent care with child care. The daughters felt that their parent now relied on them to the same extent that a child depends on their parent. In many ways, the daughters felt that their interactions with their parent resembled those with a young child (e.g., disciplining and encouraging). In other cases, daughters explained that, like a child, their parent could not be trusted to be left alone and, therefore, required regular supervision. One daughter explained that although parent care was like child care in many ways, it differed in as far as her parent would not “grow up” and mature the way a child normally would: When you raise a child, you go through the different stages, so you know that they’re becoming more and more independent, and there’s variety. This [caring for the parent] seems to be the same thing day in and day out, and you just get tired of the same thing.
Prior to the stroke, the daughters received a range of tangible support (e.g., financial, caring for daughters’ children) and intangible support (e.g., their parent just “being there” for them) from their parent. On becoming the caregiver, the daughters no longer received the same degree of support from their parent. This led the daughters to feel that they had lost a significant aspect of the relationship with their parent. Daughters described cognitive deficits (e.g., impaired judgment and reasoning and speech difficulties) as limiting the parent’s ability to engage with them and provide the same quality guidance and advice that they had prior to the stroke. The daughters also explained that these cognitive deficits detracted from the friendship they shared with their parent prior to the stroke. This was especially evident when daughters were caring for a mother who they described as being like a “girlfriend” prior to the stroke (e.g., they would vacation and go shopping together). One daughter suggested that her mother’s poststroke cognitive state and health condition contributed to their interactions becoming trivial: It’s very superficial. I mean, we still talk a lot but . . . I can’t really tell her too much about things going on in my life. Whereas I used to discuss situations with her and decisions and the pros and cons of things I had to go through . . . I’ve sort of stopped that . . . It’s been too much for her. So now, of course, that doesn’t exist. So now we try and keep things pleasant . . . that’s it . . . we just talk to keep things pleasant . . . to just interact. There’s not too much substance.
Even daughters who did not describe being “friends” with their parent noted a disturbance in the relationship as a result of the parent’s stroke-related deficits. These daughters predominantly found that speech impairments made it difficult to communicate with their parent. One daughter described the time-consuming and frustrating nature of communicating with her mother who suffers from aphasia: “Dealing with aphasia . . . that’s the most difficult thing . . . because as frustrating as it is that she can’t get it out, I’m just as frustrated wanting to know.” As a result of communication difficulties, many daughters felt that they were unable to discuss certain topics with their parents as they had prior to the stroke. Consequently, the daughters felt that they had lost the depth and quality of their communication with their parent.
Caregiving Leads to Some Relationship Enhancements
Although the daughters’ comments centered on declines in the parent–child relationship, they also alluded to some positive relationship changes that occurred as a result of the caregiving situation. Compared with daughters who had good prestroke relationships with their parents, daughters who had a poor prestroke relationship more commonly discussed positive changes in the relationship as a result of providing care. These daughters explained that spending more time with their parent than they had prior to the stroke resulted in a closer relationship. In other cases, the parent’s dependence caused daughters to become more affectionate toward them. One daughter explained that her father’s condition allowed him to be more sensitive toward her, and, therefore, helped to improve their relationship: “I think it made him probably more sensitive . . . maybe more caring . . . so it kind of took our relationship to a different level because he was able to show more emotion.”
Even some of the daughters who described a positive prestroke relationship noted that the caregiving experience had enhanced their sensitivity toward their parent (and vice versa). Many daughters described more open emotional expression between them and their parent, where one daughter suggested that this was because of an enhanced sense of empathy: I think [the relationship with my dad] is still up there in terms of respect and care and honor. I mean, if anything, you feel more sorry for somebody in the sense that there’s more outpouring of love and wanting to help because you see that person in a vulnerable state.
Impact on Physical and Emotional Health
The daughters felt that their emotional and physical health had been affected since they had taken on the caregiving role. Several daughters explained that caregiving was physically exhausting because of anxiety-related sleep disturbances, whereas others felt tired as a result of all of the “running around” they had to do (e.g., running errands for parent and trying to fulfill multiple obligations). Some daughters experienced bodily pain as a direct result of providing instrumental assistance to the parent (e.g., back pain as a result of aiding with transfers). Other daughters explained that the physical and emotional strain of the caregiving role caused them to get sick more often and to lose weight as a result of poor eating habits or loss of appetite. One daughter commented on how stress affected her weight: It was very stressful . . . it took a toll on my personal health . . . I never knew what was stress before this happened . . . especially in the acute phases . . . I lost a lot of weight, I wasn’t eating.
The provision of emotional support required a psychological/mental investment on the part of the daughters, and they considered this to be more straining than providing physical aid. In many cases, daughters strongly empathized with their parents and, therefore, shared the same emotions. One daughter described this as riding along the “emotional roller coaster” with her parent: “When I say emotional, it’s because my dad goes through these emotions, and I would have to ride along with it and then have to control my own temper.” Furthermore, daughters’ emotional well-being tended to improve as the parent recovered and regained some of their functional ability. One daughter described how her stress level decreased as her father’s health stabilized: I think it’s a direct correlation. So as he was improving with his health and things were stable and he’s kind of returning back to how he was . . . then it was less stressful for me . . . so it’s definitely helped me in the stress state that I was in before.
The daughters’ desire for emotional support further highlights the emotionally draining nature of the caregiving experience. They largely reported wanting someone they could “talk to” or someone who could “be there” for them and empathize with their situation. In many cases, daughters desired this type of support from a peer who understood what they were going through and could offer advice or guidance on the basis of their own experiences. One daughter discussed potential formats and benefits of peer support: I know everybody’s busy, but there could be online blogs or some kind of teleconferencing via telephone just to see maybe [the] different ideas that people have . . . and in terms of maybe just emotional support, like you’re not doing this alone, you know? . . . Just the caregivers . . . knowing that we’re kind of all doing this . . . in their situation how is it going . . . there could even be someone in your neighbourhood that’s going through the same situation and how can you kind of support each other.
The daughters’ comments suggested that the parent–child relationship underpinned some of the emotional aspects of the caregiving experience. For example, regardless of the quality of the relationship prior to the stroke, almost all of the daughters described being sad, shocked, and worried because their parent had a stroke. One daughter commented on her emotional response to her mom’s stroke: “It’s really sad, you know . . . not because I’m doing this [caregiving], just because [the stroke] happened . . . you know, you always ask, ‘Why me? Why my family?’”
Discussion
Several existing studies have explored how the pre- or postcaregiving relationship between a parent and a child can contribute to the child’s well-being while performing the caregiving role. These studies, however, have not focused on how adult children perceive the relationship with their parent to change as they transition into and carry out the caregiving role. Exploring these experiences from the perspective of adult daughter caregivers is an important step toward understanding the well-being of this growing population and their needs for support.
Our findings suggest that a positive prestroke relationship between a daughter and her parent facilitates the uptake of the caregiving role. These daughters became caregivers willingly and viewed it as a way of “giving back” to their parent. Concern for the parent’s well-being also led some daughters to take on the caregiving role when they presumed that other options would detract from the parent’s potential for recovery. Declines in the quality of the parent–child relationship negatively affected daughters’ well-being—especially when the daughter had a positive relationship with her parent prior to caregiving. These daughters felt saddened by the loss of valued aspects of the relationship as caregiving progressed.
The life course perspective holds that an individual’s experiences earlier in life can affect their well-being later on (Moen, Robison, & Fields, 1994). As such, this perspective emphasizes the importance of the trajectories that lead to the caregiving role as well as the transition into the role itself. The life course perspective underscores existing literature that suggests that the history of the relationship between the caregiver and care recipient can contribute to the decision to take on the caregiving role. Specifically, low-quality relations have been found to be associated with an increased desire to institutionalize the care recipient (Brodaty & Donkin, 2009). Because our sample did not equally represent daughters who had positive and negative prestroke relationships with their parent, we draw conclusions about the impact of relationship quality with caution. However, it is worth highlighting that our findings provide preliminary insight suggesting that relationship quality might underpin daughters’ motivation to take on the caregiving role. The daughters who had poor prestroke relationships with their parent often referenced extrinsic motivations (e.g., social circumstances) for becoming a caregiver.
In contrast, daughters with positive prestroke relationships were intrinsically motivated to provide care (e.g., wanted to give back) because of the affection they felt toward their parent. This suggests that daughters who have a positive parent–child relationship might take on the caregiving role out of free choice, whereas those with negative parent–child relationships do not. As the population continues to age, elders will increasingly require support to remain in their homes and communities. Although family caregivers are well-positioned to support “aging at home,” it is important that the caregiving role be taken on out of choice as opposed to out of necessity. Future research should focus on daughters with poor parent–child relationships (as well as those who choose to institutionalize their parent) so that we can gain greater insight into the range of factors and circumstances that contribute to transitioning (or not transitioning) into the caregiving role.
Daughters who have a positive prestroke relationship with their parent might be intrinsically motivated to become the caregiver, but relationship quality might not have the same implications for maintaining the caregiving role. For example, the relationship’s impact on well-being later on in the caregiving trajectory might differ from its impact at the outset. As such, longitudinal studies would provide important insight into how the parent–child relationship influences (a) well-being as time progresses and (b) the daughter’s ability to sustain the caregiving role. This underscores research that suggests caregiver experiences and needs change over time (Cameron, Naglie, Silver, & Gignac, 2013). In the present study, daughters who had a positive relationship with their parent prior to stroke seemed to experience poorer well-being as the relationship with their parent declined over time. This is in contrast to literature that suggests that positive preillness relationships can reduce the negative impact of care recipients’ behavioral problems on caregiver burden and depression (Steadman, Tremont, & Davis, 2007).
It is postulated that although a positive pre-caregiving relationship might be associated with better caregiving outcomes, this association might be altered when relationship changes are taken into consideration across the caregiving continuum. Specifically, declines in the parent–child relationship might be especially threatening to the well-being of daughters who enjoyed a high-quality relationship with their parent prior to caregiving.
Implications for Clinical Practice
Whereas many qualitative approaches (e.g., grounded theory and phenomenology) focus on high-level interpretation and theory generation, qualitative description allows researchers to remain close to the data and provide a rich description of the participants’ direct experiences (Sullivan-Bolyai, Bova, & Harper, 2005). In this way, the findings of our qualitative descriptive study can meaningfully inform intervention development because they directly reflect the perspectives of the daughters, thereby decreasing the chance that their experiences and needs have been misinterpreted or misrepresented (Sullivan-Bolyai et al., 2005).
To this end, our findings indicate that daughters might require counseling throughout the caregiving experience that is specific to relationship issues with their parent. To date, support programs for stroke caregivers predominantly consisted of caregiver training and education (Brereton, Carroll, & Barnston, 2007). Those who have incorporated a counseling element have focused on problem solving and behavioral counseling (Brereton et al., 2007). Targeted counseling that addresses relationship issues can be incorporated into existing support programs to help daughters cope with difficult changes in the relationship with their parent and enhance the engagement between the two parties. This can mitigate the loss of valued aspects of the relationship (e.g., communication and intimacy) that the daughters experience as the relationship with their parent declines. To provide time-appropriate support to daughters, it will be important to conduct longitudinal studies that measure changes in both the quality of the parent–child relationship and caregiver well-being over time.
Strengths and Limitations
To our knowledge, no studies to date have qualitatively explored the pre- and poststroke daughter-to-parent relationship and how changes in the relationship might contribute to daughters’ well-being in the context of stroke caregiving. As such, strength of our study lies in its contribution to this body of caregiving literature. The various recruitment strategies employed add to the breadth of experiences that we captured and, in turn, enhance the transferability of the findings.
Our study’s sample population consisted of daughters with predominantly positive prestroke relationships with their parents. As a result, this overrepresentation might have limited our ability to capture important changes in the parent–child relationship that stem from initially poor relationships. For example, we could not provide a robust account of the motivations for caregiving that are not based on positive parent–child relationships. Furthermore, we were not able to rigorously probe the enhancements in the parent–child relationship that take place when the relationship is initially poor. Additional limitations include the simplified dichotomy between “good” and “bad” parent–child relationships as well as the absence of the parent’s perspective. These perspectives are important because research has suggested that dyadic relationship strain is significantly associated with depression for both caregivers and care recipients (Sebern & Whitlatch, 2007). Future research should address these limitations to provide a more in-depth and holistic understanding of the parent–child relationship and to inform interventions that are tailored to both daughter caregivers and parents.
Conclusion
The present qualitative study adds to the literature by providing insight into how daughters perceive the relationship with their parent to change and how these changes contribute to their well-being as they transition into and carry out the caregiving role. Our findings suggest that the changes that take place in the parent–child relationship as a result of the parent experiencing a stroke make an important impact on daughters’ well-being. Specifically, declines in the relationship seem to affect daughters’ well-being in a negative way. This was highlighted by the observation that daughters who had a positive prestroke relationship with their parent (as compared with those with poor prestroke relationships) described greater emotional hardship as the quality of the relationship diminished over time.
The present findings suggest the need to further investigate the caregiving experiences of daughters specifically and adult children in general. Concentrating on daughters who (a) have poor prestroke relationships with their parents or (b) do not take on the caregiving role would provide a more holistic understanding of how the parent–child relationship influences the decision to become a caregiver. Although positive prestroke relationships facilitate the uptake of the caregiving role, losing valued aspects of the relationship can negatively affect caregivers’ emotional health. Longitudinal studies would provide insight into the influence of relationship changes on caregiver well-being over time and the needs of daughters across the caregiving trajectory.
Footnotes
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by a research grant from the Ontario Stroke System (Grant OSN1101-000124).